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NCT03489278 Clinical Trial

Clinical Procedures to Support Research in ALS

Amyotrophic Lateral Sclerosis Clinical Trial

— CAPTURE-ALS  

Official title:
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)

Clinical Trial Details — Status: Recruiting

Administrative data
NCT number NCT03489278
Other study ID # 20170785
Secondary ID U54NS092091
Status Recruiting
Phase
First received
Last updated
Start date February 15, 2018
Est. completion date June 2025

Study information
Verified date May 2024
Source University of Miami
Contact Michael Benatar, MBChB, MS, DPhil
Phone 1-844-837-1031
Email projectcreate@miami.edu
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.

Description:

The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.

Recruitment information / eligibility
Status Recruiting
Enrollment 1200
Est. completion date June 2025
Est. primary completion date June 2025
Accepts healthy volunteers No
Gender All
Age group 18 Years and older
Eligibility Inclusion Criteria: - Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy). - Receiving care at a clinical center that uses Epic as its EHR. - Able and willing to provide informed consent (or informed consent obtainable from a designated proxy). Exclusion Criteria: - Inability to understand English and/or Spanish

Study Design

Related Conditions & MeSH terms

Locations
Country Name City State
United States Duke University Durham North Carolina
United States University of California, Irvine Irvine California
United States University of Kansas Medical Center Kansas City Kansas
United States University of Miami Miami Florida
United States Hennepin County Medical Center Minneapolis Minnesota
United States Columbia University New York New York
United States Stanford University Palo Alto California
United States Providence Health & Services Portland Oregon
United States University of Texas San Antonio Health Science Center San Antonio Texas
United States California Pacific Medical Center San Francisco California
United States Wake Forest University Winston-Salem North Carolina

Sponsors (5)
Lead Sponsor Collaborator
University of Miami Muscular Dystrophy Association, National Center for Advancing Translational Sciences (NCATS), National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH)

Country where clinical trial is conducted

United States, 

Outcome
Type Measure Description Time frame Safety issue
Primary Using the ALS Toolkit for collecting and using electronic health record data for research purposes 12 months
See also
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